Arm swelling/cording...but unable to see PT-CLT

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Sonata
Sonata Member Posts: 221
edited June 2014 in Lymphedema

Well, I come to post here today with a heavy, frustrated heart. Cry Sorry for the length.

 After seeing my BS on monday, she wrote me a referral to see a PT-CLT. My right arm has noticeable (as in there are indentations from my shirt seams on my arm) swelling in it and there is still some cording near my elbow as well. It feels heavy and aches more than not. She thought it would be a good idea to get an evaluation done.
So I came home feeling grateful that I had a Dr who really listened and had my best interest at heart. I did some research, found some names of local therapists who have LE training, and called to make an appointment with one. I felt like it was my lucky day when the office I called said they had a cancellation for today, could I come? I confirmed the appt and was finally relieved that it was going to be looked at and maybe be 'caught early'.

As I was getting ready to go, the phone rang. It was the PT office, calling to tell me they'd called to verify my health insurance, and get this.....Its seems I have NO coverage at all for physical therapy of any kind. Cry I ended up cancelling the appt for today as there was no way I could afford to pay for the eval out of my own pocket. Btw, I called my seemingly crappy insurance to verify what the PT office told me. Evidently, the employer my dh works for picks the cheapest insurance possible just so he can say he provides. I guess I should be grateful they paid for my BMX in November.

So now what do I do? I certainly can't afford to pay for PT out of my own pocket. I'm just about broke as it is from all the other medical bills I currently have. I just had my BMX 7 weeks ago, so I've got stuff coming in left and right. Its apparent from my Surgeons concern (and my own) that there IS something going on in my right arm. I certainly want to stay in the early stages of it before it becomes full-blown and uncontrollable. I'm doing what I can here at home, taking precautions, being careful, but will that really be enough? I'm just so frustrated that this insurance company will pay for an $80k surgery, but not for any therapy afterwards. Hello?!?! How much sense does that make?

Any suggestions from the BC.org LE experts? You are my last hope.

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Comments

  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2012

    Soprano, I'm so sorry about the dilemma you find yourself in.Frown The LE is bad enough without all the payment worries. Since it must all feel completely overwhelming, maybe we could sort it out one step at a time and see if any of it helps.

    First, the cording is a bummer, but it will resolve. It may even return at a later date, especially if you overwork your arm without building up to it, but it's not going to be a chronic problem that you need PT to deal with. There are some helpful Youtube videos showing exercises you can do to help with it, so when you're ready to deal with that please let us know and we'll steer you to them. For now, when you're showering in WARM water, not hot (hot water can make swelling worse) trying gently stretching your arm up along the wall.

    Second, the lymphedema. It will eventually require some professional help from a good lymphedema therapist, so for now just consider that you're waiting for an appointment and follow the steps anyone has to follow when they're waiting for a LE therapy appointment -- it's not uncommon to have to wait several weeks or even months, so please don't panic yet.Smile Even though LE treatment is not a do-it-yourself proposition, there are many things you can do to lessen the impact. You'll find them listed here:
    http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#while%20waiting

    Since one of our major worries as lymphers is cellulitis (infection), be sure to be alert to any signs of that and get help quickly from any doctor your insurance will let you see. Here's information about infection:
    http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htm

    Please know there's a wealth of experience and information here from so many wonderful women, so if you have specific questions, come and ask and we'll all do our best to help.

    As far as affording PT, places to start asking for assistance would be your cancer center's social worker and the local chapters of the American Cancer Society and Komen. Some women have gotten good help from those sources, but it all depends on the specific local area resources.

    We're here for you. Tell us how we can help.

    Hugs, prayers for all the right answers,
    Binney

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  • lago
    lago Member Posts: 17,186
    edited January 2012

    Lisa I had to wait to get treated for LE too. I had cording after my BMX but didn't know what it was. It wasn't till 4 months later that I developed LE. Initially my onc diagnosed me but just told me to exercise. It got worse (discomfort) so I contacted my PS and told him I was diagnosed with LE. He sent me to an LE MD (I don't think this was necessary) who was on vacation. Once I got to see him then I had to set up an appointment with an LE PT.

    I know the place I was doing PT would charge less if your insurance didn't cover it. They had this "agreed on" price from the insurance companies that was actually higher. Go figure. I would contact a social worker where you were treated or the American Cancer Society. ACS does have social workers there that can help you navigate and maybe get some assistance. ACS is free.

    EDIT:
    Forgot to mention the right arm had the cording (4 nodes removed). I actually ended up with the LE in the right arm that had very little cording but 10 nodes removed.

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  • Kay_G
    Kay_G Member Posts: 3,345
    edited January 2012

    It sounds like you have received some good advice on where to start.  I would hope the social worker at the hospital would be a big help.  Please come back and let us know what happened.  Don't give up, a solution will appear.

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  • KS1
    KS1 Member Posts: 632
    edited January 2012
    I'm not a lawyer, but my understanding is that a US federal law (the Women's Health and Cancer Right Act of 1998) says that -- with a very few exceptions -- if an insurance company covers treatment of breast cancer (i.e., surgery) , they have to cover treatment of complications (like lymphedema). Here's a quote I found from a BC support group:


    "Under the WHCRA, mastectomy benefits must cover:

    Reconstruction of the breast that was removed by mastectomy

    Surgery and reconstruction of the other breast to make the breasts look symmetrical or balanced after mastectomy

    Any external breast prostheses (breast forms that fit into your bra) that are needed before or during the reconstruction

    Any physical complications at all stages of mastectomy, including lymphedema"

    Here's the URL for the US Dept of Labor cite (you may need to cut and paste the URL into your browser)

    http://www.dol.gov/ebsa/publications/whcra.html

    Reading the DOL summary, it is possible that if an insurance company provides no PT coverage for any condition, they don't have to cover LE therapy, but it is worth double checking with your insurance company. When you talk to them, cite the Women's Health and Cancer Right Act of 1998 by NAME. I was originally told that I didn't have certain benefits, but when I cited the WHCRA, I was told I was covered.

    Good luck! KS1

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  • kate2011
    kate2011 Member Posts: 121
    edited January 2012

    Hi Southern Soprano.

    I just sent you a PM.  Sorry you are dealing with this.

    Kate

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  • kira66715
    kira66715 Member Posts: 4,681
    edited January 2012

    It sounds like everyone is giving good advice, and we're sick about the fact that your insurance has no coverage for PT, which is the only treatment for LE

    Some less expensive options are to check the sites for qualified therapists and contact the ones in private practice--my LE therapist is a great LMT and will do sliding scale.

    Also, some PT centers will reduce the price for people without coverage.

    As Binney said, consider you are waiting for an appointment--also feel free to embarass the insurance company, let them know that you have developed a disease from your breast cancer treatment, and they are not covering necessary therapy, and consider going public--if you're comfortable with that. I used to work for an insurance company and they caved when faced with bad publicity.

    If you go to the Northwest lymphedema center, there are some self care videos that can give you an overview

    http://www.nwlymphedemacenter.org/

    It's hard to fight when you're dealing with this, and it just isn't fair or right. Hmm, wonder if your congressperson would be just as appalled.

    Kira

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